Week 3 Post Taxol

I’m starting to feel like these posts should have a melody. Y’know, like the 12 days of Christmas, cuz I know it’s going to be a long while before I get to that single partridge in a pear tree.

Some of the changes are so subtle it’s hard to notice them, and like everything else, some days are better than others. This week I’m also working through post-surgery issues, so sometimes the post-chemo things and the post-op things cross into each other.

The neuropathy is still hanging around. I thought it was gone in my fingertips, but certain things will make me notice it more than others. My feet are still tingly or feel swollen even though they’re not. They’re not burning when I walk more than a few feet anymore. That’s really helpful because I need to be getting some exercise. Something I didn’t mention before is that my teeth hurt. All 32 of them. They’re very slowly getting better. The worst part, though, is when you get that fingernails on chalkboard feeling but instead of going up your spine, it rattles through your teeth. So much fun!

My hair’s growing very slowly.  I keep joking that I look like Anderson Cooper. Yeah, it’s a stretch. I just want someone to laugh. My eyebrows are taking their damned sweet time. I’ve got like one out of the 5 hairs there that isn’t just gray. What the hell? My eyelashes are starting to come back. They’re just little stubs, but better than none at all.

I still have a metallic taste/feel in my mouth. It’s not as bad as before. Many foods still taste like yuck, but the list of things that do taste okay is getting longer. Sweets are still not on this list. There are a few sweet things that taste okay, but not many. I’m still liking this. The more I get away from sugar, the better my health will be overall. Same with caffeine.

The one thing this week that’s worse again is the reflux. It’s up again because of the ibuprofen I’m taking post-surgery, but OMG, I’m sick of choking on my stomach every night. I’m taking Nexium and Pepcid at bedtime. In the middle of the night when it starts, I eat about 4-6 Tums. It’s crazy. It’s been bad enough that I’ve had to get up and use my inhalers to make the wheezing stop. Sounding like a dog’s chew toy would be funnier if it didn’t keep me awake at night.

A good thing is that my skin is still doing better. I’m starting to notice that I need less lotion on my hands day by day. The rest of my body is also starting to absorb less lotion. Another thing on my hands – I had my ring cut off last week because the reaction of my skin from the chemo with any kind of hand cream or lotion was completely unbearable. If you have rings that are tight or irritated, and they’re on the side where you’ll have lymph nodes removed, have it taken off at least a week before surgery to help prevent complications like lymphedema. I’ll eventually get my ring repaired and re-sized. While I’m sad I can’t wear it, I’d rather keep my finger and not have issues with lymphedema right out of the gate. Not that I ever want lymphedema. I know you get it.

From left to right:

  1. Ring on – you can see the skin’s irritated and my finger’s quite swollen. I was having trouble getting the swelling down even while using ice on it.
  2. Within an hour of having the ring removed. It was digging into my finger and the irritation is much more noticeable.
  3. 1 week after having the ring removed. There are still marks from it being on my finger so long. The skin’s not as irritated and seems to have stopped peeling.
Ring on finger Removed Ring Ring Finger - 1 Week Later
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Mouth Care on Chemo

While you’re on chemo, and particularly AC chemo, your mouth will be drier and you’ll start getting canker-like sores in your mouth and into your throat. The canker sores can be very painful. As a result of dry mouth, vomiting and chemo, your teeth take a beating when you have cancer. Plan ahead to ensure that you stay ahead of this so you can continue to eat.

Magic Mouthwash: This is available by prescription from the oncologist. If you have sores in your mouth or throat that make it too painful to swallow, you might need to use some Magic Mouthwash. Its key ingredient is lidocaine for the pain along with a few other items that help tame the inflammation. Thankfully, I never needed to use mine.

Baking Soda Rinses – The oncologist recommended using 1 teaspoon of baking soda in 8 oz of warm water as a rinse to be used throughout the day. I did a lot of these. I was probably rinsing 6 times a day. They helped keep the sores in check. When they started going beyond, I’d move to another treatment in addition to these rinses.

Rincinol – This magic product, made by G-U-M, (which I could never seem to find locally, and yes, it’s on Amazon) is one that my former dentist recommended and said she’s now recommending to all her patients for pain from sores in the mouth.

Peroxyl – Made by Colgate, it’s rinse with hydrogen peroxide that helps to clean and heal sores in the mouth.  I used this a couple of times per day, and mostly at night before I went to bed.

Biotene – I’m sure you’ve seen the commercials on TV for this product and dry mouth. There are a number of medical issues, and their treatments, that cause dry mouth. Chemo is one of them. I also used this before I went to bed, and sometimes in the middle of the night when I woke up particularly dry.

Clinpro 5000 – Made by 3M, this is a toothpaste with extra fluoride mixed in. The majority of toothpastes on the market have about 0.15% fluoride in them. Clinpro 5000 has 1.1% fluoride. The extra fluoride helps to strengthen the teeth to help prevent cavities. This stuff is pretty expensive, but during chemo, it’s worth it.

Fluoride Varnish – This is the same stuff that gets painted onto kids’ teeth to help prevent cavities. Its job for cancer patients is really about the same. It helps keep your teeth strong through the chemo, mouth sores and vomiting. I have it done once a month. It’s not horribly costly, but my dental insurer, Delta Dental of WA refuses to even talk to me about covering it. This is nuts because when there is a medical treatment that I can’t do, my medical insurance provider will at least entertain a conversation. Not the dental people. If you can afford the $40-50/month, just do it.

L-Lysine – This is an over-the-counter amino acid supplement that you may not need if you get enough of it from foods. “Good sources of lysine are high-protein foods such as eggs, meat (specifically red meat, lamb, pork, and poultry), soy, beans and peas, cheese (particularly Parmesan), and certain fish (such as cod and sardines).”¹ I learned about L-Lysine many years ago when I found a cream made with it for treating cold sores. I figured that if it worked as a topical, I must be missing some of it in my diet, so I started taking the supplements as well when I started getting a canker or cold sore. It seems to help. So… when I started chemo and started getting mouth sores, I added a couple of tablets to my daily medication/supplement regimen. Your results may vary.

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The Fluoride Backstory

Rather than just jump on the outrage wagon, I should have written about the why of the fluoride treatments in the first place. Sigh. So here goes.

Right after I got diagnosed and was told I was going to be doing 5 months of chemo, I went to the dentist. I’d been looking for a new one for a while, so I hadn’t been in a couple of years. (Yeah, I know. don’t say it.) The last time I’d been in was to see my former dentist in Houston while I was there working on a project. That was in 2013. I’ve got pretty good teeth, and I brush and floss at least twice a day, so they weren’t completely off the charts gross.

After my bitewing x-rays and cleaning, the new dentist showed me a couple of spots we need to watch. One is a food trap and the other is the crown I had put in umpty-ump* years ago. The crown has a gap up near my gum line. I’m thinking, “Uh oh. This can’t be good.” I know I don’t have enough time for the dentist to start the process for putting in a replacement crown before I start chemo. The dentist tells me that older crowns are like “pandora’s box” when opened. She never knows what she’ll find. So after talking with the oncologist about what I can and can’t, or should and shouldn’t do while on chemo, I’m feeling a little panicked about all of this.

I looked up my former dentist and left a message with her office about this gap in my crown to see what she thinks should be done and when. During some back and forth phone calls I learn that she’s also going through chemo for colon/liver cancer. When she got back in the office the following week, she gave me a call and we talked about our respective cancers, the chemos that I was going to get and what she thought about the crown and overall preventive measures to protect my teeth through chemo. She tells me that she has another patient going through chemo that will require new crowns and two root canals. Ugh, that sounds awful!

It is during this call that she tells me that I’d be wise to have the fluoride varnish painted on my teeth monthly while I’m going through my cancer treatment. This dentist took great care of me and my teeth for 14 years. I trust her. I start making appointments to have fluoride varnish applied to my teeth.

I am allowed 2 of these treatments per year on our dental plan. I started my chemo treatments in November, so both of the treatments I had in 2017 are covered. The January and February 2018 treatments are also covered because our insurance rolls over on the calendar year, not our fiscal year. In March, I tried contacting Delta about covering the remaining varnishes. They say they’ll look at it and then don’t get back to me. When I called last week, I was told that they wouldn’t even talk about it because my company bought a certain plan and there is no deviating from the plan.

So this is where I’m currently sitting. The treatments aren’t horribly expensive, but they should still be covered. Cancer treatments are no picnic. If there is something to be done to prevent additional pain and suffering later, it should be done. I feel that way whether it’s physical therapy, neuropsych assessments, starting yoga, baking soda rinses or dental fluoride varnishes. It’s time for a change in our healthcare systems.

We pay thousands upon thousands in healthcare premiums each year. Some policies are better than others. We know this. There are Cadillac plans and barely a bicycle plans. Dental coverage in the US is considered a “nice to  have.” Poor dental care leads to other health issues such as heart disease, diabetes, dementia, kidney disease, and a host of other chronic health problems. It makes sense. Your mouth is the gateway to all of your other major organs. It makes sense that you’d have heart, lung and digestive issues when your teeth are rotting out of your mouth. We need to push for better dental care from our employers and our other health care professionals.

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When Doves Fly

Cloud Shaped Like a Dove - All rights reserved (c) Lori Hanley Focus and Clairty Images

A year ago today, I saw this dove-shaped cloud on my last night of a work trip in Michigan. It gave me great joy to see it and watch it move across the sky as the sun was going down.

I feel so much like my wings were clipped since getting my diagnosis. It’s such a great metaphor for where I’ve been living for the past 6 months. I was plucked from the sky, captured and stuck in a coop. Every time I tried to spread my wings to get out, I wasn’t able to get off the ground, and it was exhausting to try. There isn’t much peace or joy to find in any of that.

“Birds in dreams symbolize goals, aspirations and hopes. To dream of chirping and/or flying birds represent joy, harmony, ecstasy, balance, and love.”

Surgery is my next big milestone, and today is surgery day. I can now finally begin to dream of being able to spread my wings and fly again.

Peace, friends!

 


*The meaning of birds in dreams

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Good Luck To You!

There’s nothing quite like hearing “screw you” from your dental insurance provider when it comes to additional needed procedures due to your cancer.

I’ve so far been *really* lucky with my health insurance. Most everything’s been covered, and for those things that aren’t, I’ve also been lucky that there is a reasonable payment plan available through the hospital.

My dental insurance, however… there’s no consideration for humanity. Even though I am getting additional fluoride treatments to help preserve my teeth and prevent additional problems stemming from chemotherapy, there is absolutely no wiggle room from them whatsoever in coverage. They blame the company I work for. No seriously, they do.

If I really couldn’t handle one of the drugs I was being prescribed by the oncologists, there are petitions that can be filed most health insurance plans that would allow me to switch to a different drug and have it be covered. Not so with the dental insurer!

The cost of the additional fluoride treatments isn’t prohibitive, but jeez. It’s fricking cancer. It’s not like cancer and chemo don’t cause enough problems, and it’s more than expensive enough as it is. Why the hell do they have to add to it?

A process should exist that allows for coverage for procedures needed between your health and dental insurance, and it doesn’t. According to my dental insurance provider, my company bought a plan, and there is no deviation from that plan. Even when I told the agent that I have cancer and need these additional treatments to save my teeth and prevent expensive procedures later, his answer was “too bad.”. I guess prevention really isn’t worth a pound of cure when it comes to your teeth.

 

 

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Week 2 Without Taxol

Today is Week 2 after stopping Taxol. I’ve started noticing a few more changes since last week. They’re still not dramatic or Earth shattering, but they *are* progress.

After the last couple of doses of Taxol I started losing the feeling in the tips of my thumbs and forefingers. That made buttoning my shirts more interesting. I was fumbling more with the buttons, and I could feel that I was missing them because of the loss of sensation in the tips of my fingers. It was kind of weird. This week, my fingertips are less numb. I can feel its still there, but it’s less and going away. My hands still burn if I clench them or wring them together – like when I’m drying them after washing. My feet are also less numb. I can feel my toes again, and I have more of a tingly feeling in the bottoms of my feet where they were numb before. When the neuropathy started, there were patches where I felt like I had blisters but there was nothing there. I also told my oncologist that they felt “crunchy.” Some of that was because they were dry but more of it was from neuropathy.

My skin is recovering day by day. It doesn’t burn anymore when I use soap in the shower. I’m not having to use gallons of hand cream to keep my skin soft. It’s not peeling anymore, either. I still have a few spots where it’s peeling on my face and my forearms, but they’re getting smaller by the day. I don’t itch anymore. Thank God. I noticed the other day that I had a bunch of red itchy spots on my arms, legs and back. Turns out the my body hair is growing back and I had a bunch of little spots like ingrown hairs everywhere. That was fun.

My hair is slowly coming back. So far it’s only a little more than 1/4″ long. Not quite as long as it was when I had it cut for the wig, but getting close. It’s all silver grey right now. I had grey roots before, so I’m interested in seeing what color actually grows in as time goes on.

I’m still tired. My energy is a little better, but not significantly or drastically so. I am not sure I expect that I will ever get that all back. I’ve seen feedback from other survivors that said that their energy levels never got back to what they were before cancer. Similar stories with chemo brain.

I’m still not very hungry. One of my oncologists told me at my 2nd to last dose of Taxol that inflamed bodies don’t like to eat and that my body was really inflamed. I could believe both, so when I am eating, I’m trying to eat things that don’t make that worse. Things like fresh veggies and meats. I’ve been avoiding gluten and dairy a bit. Unfortunately, I need milk and malt to mask the taste of the glutamine, so I’m not drinking a big glass of that every day for the time being. I’m probably getting 1 or 2 a week right now. The theory being that the glutamine was supposed to help prevent the neuropathy, so it might help with repairing those nerve fibers as well. My digestive system overall is a little happier, I think. I don’t want to get into the details about pooping, so I’ll just leave it at “it’s getting better.” Fewer episodes of reflux at night is a definite change for the better, too.

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Week 1 Without Taxol

I had my last dose of Taxol on April 20, 2018. I was given Taxol for a total of 12 weeks. Its toll on my body was noticeable and mostly painful and tiresome in the most literal senses of the words. For several weeks, the only part of my body that didn’t hurt was my hair. Yes, I said hair. I wasn’t completely exhausted but my energy wasn’t there, either.

What was it like that first week being off Taxol? Honestly, not any different than when I was getting it administered weekly. Several weeks ago, my oncologist decreased the dosage to 80% and then again down to 75% for the last few infusions. The neuropathy in my feet was getting unmanageable and it had claimed the feeling in almost 3/4 of both of my feet. I had 4 numb toes and the others were starting to go numb as well. After the decreased dosage, I started noticing that my hair was starting to grow back. That was really the only change I noticed in Week 1. I had some hair. My skin was still really dry and really irritated. My feet would start burning after walking just 10 feet. By week 7, my right eye started watering quite a bit, which the oncologist said was Taxol playing games. By week 9 I had allergic conjunctivitis and only in my right eye. It’s still there, and I’m still rinsing my eyes with saline and eye drops a couple of times a day. j

I knew not to have too high hopes or expectations for my first week off Taxol. Its half-life is 14-21 days, so I really don’t expect to start seeing much change until weeks 3 and 4. Some of these changes may be masked by the side effects of Herceptin, too. I’m still getting that every 3 weeks for another 9 months. As always… one day and one step at a time.

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